Language shapes our reality. Whether spoken with proper enunciation and grammar or bent and twisted in the neighborhoods, it shapes who we are and how we see the world. Do you have an abortion or do you have your pregnancy terminated? Are those kids over there retarded or are they mentally challenged? Do we torture terror suspects or do we use enhanced interrogation?

Our language is governed by a series of rules; we know perfectly well that we are not permitted to say just anything; there are prohibitions on our language that are shaped, largely, by whichever group is in power. The philosopher Michel Foucault, in his address “The Discourse on Language”, theorized that prohibitions on speech reveal links with desire and power. There is a constant struggle with language, who gets to use it and who gets to shape it. In my lifetime individuals with black and brown skin were called “colored” or “negro.” In the wake of the Civil Rights Movement in America and demands by black and brown citizens to claim power and equality, today we say–as a matter of course–African American. Individuals with black and brown skin declared their power by constructing a description that was both respectful and honored their heritage. There was a cultural shift and the language reflected it. And this is where I introduce the breasts.

The entire pink ribbon culture is a glorious exercise in how language is used to shape a conversation in society and who stakes the claim on power. Gayle Sulik, in her book Pink Ribbon Blues, argues that women’s magazines in the 1950s served as a vehicle through which medical terminology, treatments, and prognoses became “normalized.” These magazines were able to present this information in a way that preserved the accepted social order and women’s place in it. “In accord with women’s roles in society,” writes Sulik. “Women’s actions on behalf of their health were defined in terms of [their] compliance to medical protocols and [their] dependence on men, both husbands and doctors.” (115).

Keep in mind, these were not the days of the interwebs, so the information that you received from magazines that perpetuated socially acceptable gender roles was basically what you trusted and believed. You modeled your life on it. Now, let’s take the information you would have read and been told and fold in the idea that language is constructed by those in power.

Prior to the 1950s the removal of breast tissue was largely characterized as an amputation. The Oxford English Dictionary indicates that the first instance of the word mastectomy was used in 1923. I performed a cursory search of newspaper articles and journals in the United States over the first fifty years of the 20th century and saw that amputation was used almost exclusively before the 1950s. Medical journals continued to use the term interchangeably (and still do), but for information that faced the general public, the new term term, mastectomy–defined by a wholly patriarchal medical structure–took hold. Within the construct of language and the authority that it conveyed, a mastectomy–its brutally honest meaning obfuscated by sophisticated medical terminology–was now the procedure offered to women.

Some weeks ago I was chatting with my friend Crystal. She was diagnosed with ductal carcinoma in situ (DCIS) and had a bilateral mastectomy. The pathology report revealed that every milk duct in her left breast had pre-cancerous cells. She made it through surgery and reconstruction, but the impact was still pretty raw. She discussed her feelings of loss, phantom pain, and the feeling that aliens were now inside her body. “I had a mastectomy, Scorchy, which was– let’s face it–an amputation. I had a breast amputation.”

Breast cancer has become almost a right of passage. The incidents so outrageous–one out of eight women–that the pink movement has set you all up for your experience: first you’ll set up your blog, then you’ll have your nipple sparing mastectomy or a lumpectomy, you’ll get chemo and lose your hair–which will automatically make you a part of the sisterhood. You’ll have photographs taken with pink feather boas and pink hair, and pink shirts, and pink shoes. And it’s the good cancer, so you’ll be fine. When the warrior becomes a survivor, they get a pink ribbon tattoo on their person. And, hey, do you want to walk for the cure with me this Pinktober?

This disease has been feminized so completely that I argue the word mastectomy has taken on a similar feminized meaning–all co-opted as part of this twisted pink ribbon culture. If I had been diagnosed with a sarcoma that necessitated the amputation of my right leg, would I be so amenable to having my left leg amputated to prevent a recurrence? What if a history of bone cancer ran in my family? Would I be so willing to agree to have my arms amputated as a preventive measure ? And if I was a man and was diagnosed with cancer in my right testicle, would I have the left testicle removed just in case?

Any woman who has had a mastectomy can speak to the physical and emotional pain and the fear; the impact it has on her family, her friends, and her work; and not to mention a fear of the future. And in writing this essay my intent is not to judge anyone for any decision they have made, but I absolutely want to make you uncomfortable. Uncomfortable enough to consider–just for a moment–how the removal of a woman’s breasts has become so universally matter-of-fact and accepted. And how our language and technological advances (which have been dictated within a particular power structure) have played a central role in framing that acceptance.

I have, as you might imagine, so much more to say on this subject. But for the moment I will leave you with a video from Wellcome Film in the UK. Filmed in 1930, the title tells you all you need to know: Radical Amputation of the Breast for Duct Carcinoma. It is in black and white, but it is brutal. Viewer discretion is advised.

58 Responses to Language

Perhaps if we did not try to soften the impact so much, people would be horrified enough that such surgeries happen so routinely, that more progress would be made. I do truly believe that same word, whether it is mastectomy or amputation, should NOT be use for both skin-sparing mastectomy with immediate reconstruction and modified radical mastectomy. Using mastectomy (often making no distinction which it is) for both surgeries leads to many false perceptions by many people.

I honestly believed if I got mammograms and did self-checks, the worst that would happen to me would be a lumpectomy. And because of breast cancer in my family, I had deliberately sought to educate myself about breast cancer. (Clearly, not well enough, I believed too much “pink” propaganda.)

Far too many people told me not to take it so hard, I would wake up with new better boobs. The lady in charge of my small town cancer support center told me I would have been able to save my breast if I had gone to our town’s oncologist and surgeon rather than that big city cancer center. Several people told me that at my age I shouldn’t care about losing a breast. (I’m in my 50s.) Lost count of the people who have told me if I am just positive enough, I can beat this.

I had stage 3 Inflammatory Breast Cancer, now stage 4 because it metastasized to my spine. I finally have a date set for reconstruction next year, provided no new medical reasons to cancel occur.

I didn’t watch the film. I couldn’t. I always fear that once they have you “out” for any surgery, they are less gentle than they could be.

I had a lumpectomy. I couldn’t accept the first surgeon’s edict of “mastectomy”. I found another surgeon who, after my logic and explanation, agreed to do the lumpectomy.

It is the loss of a body part, though it may not be as critical to daily function as an arm or leg, it is a body part nonetheless. As I was faced with the options, I kept being told things that made me offer the comparison to a man being told that he should lose the whole penis.

Great writing my dear. Great comments. I get caught up in them and then forget what it was I wanted to comment. ❤ -shelli

Every time I read this I get a lump in my throat and tears in my eyes. Even though its been six months since the “mastectomies” and two months since reconstruction and I look normal on the outside (with clothes on, anyway!), I do not feel normal on the inside. My whole reality is skewed. I made a joking comment to a few of my colleagues about my experience, and I actually got the response, “We’re tired of hearing about your boobs.” I was quite pissed really. Why anyone thinks having two breasts removed and these uncomfortable things put in your body so you look “normal” is no big deal is beyond me. Sometimes I think we are encouraged to have reconstruction to lessen the discomfort of others and not just ourselves. The whole pink culture cleans up the reality of what breast cancer, the surgeries, the chemo and radiation really are…grueling treatment for an ugly and painful disease. I will never be the same person ever. Am I a little breast obsessed at this point? Yes. But I think I deserve to be. And piss off to those who get tired of hearing about it. I need to talk (and joke) about it to really heal on the inside.

You know, people can be such jackasses. I mean, c’mon. Maybe you’re tired of hearing it, but let your FRIEND speak! I know if someone told me they were tired of hearing about my cancer I’d tell them to fuck off. God bless my friends for letting me talk. I love every single one of them (and you).

This is a trauma–you don’t just get over a trauma of this magnitude. Does anyone get over it? I can’t imagine they do.

I think there is a sense of equating reconstruction with vanity breast augmentation and that has as much to do with the patriarchal culture of which we are a part and that effing pink mania.

Crystal, that made me so sad that your coworkers actually said that to you! People, it seems, and there have been studies done on this, I am told, have a window of caring, a fixed amount of time they can spend on someone else’s illness. It sucks, and it is uncompassionate. If you had something else equally as traumatic done, while the window still remains, I have to wonder if they would be more willing to hear about your grief at the loss. Breast cancer has indeed become accepted to the point of being commonplace to the point of the person having it not being given enough compassion and care afterward.

Don’t you just love when Scorchy, out of the blue, says a “bad word” and you think, “EXACTLY!” Love to you. -shelli

Scorchy, I’ve had a double mastectomy with reconstruction, and you brought up such a good point about language. It is an amputation the we ourselves have to choose in order to save our lives. I loved this post, so powerful. Thank you.

Spot on Scorchy. I have not had cancer, but when my best friend Sara Pomish was diagnosed I started paying much more attention to everything about it. The pink marketing annoyed me almost immediately, thank you for articulating exactly how I feel about that business. Barbie doesn’t get breast cancer, real women do. Barbie doesn’t die from breast cancer, much loved real
women do. And it is absolutely amputation. I can’t bring myself to watch that video, because you are so right.

I cannot even begin to comment on the content of this article, I am so in awe of your brilliant prose and your razor-sharp (no pun intended) observations on this topic. (Of course I am not without an opinion–seldom does that occur–however I require time for a thoughtful response to this, your best work to date.)

Scorchy, this is a brilliant, insightful post about how we use language to mask the realities. I agree that the pink ribbon culture is harmful. Our society often feels the need to “pretty up” breast cancer, and I’m sick of it, frankly. Regarding the amputation vs. mastectomy language, I had a double mastectomy with reconstruction, which was really necessary in my case (both). However, it was truly an amputation. Not a day goes by that I am unaware that my breasts were not the ones I was born to have. I’m as happy about the surgical result as I could be, but the problem is that a double mastectomy is often the choice of the patient. We have to choose to amputate parts of ourselves, kind of like a wild animal chewing off its leg when caught in a trap. Basic survival. I can’t bear to watch the video. Too emotional for me.

my first clinical in surgery as a nursing student was to observe a breast amputation. there were two surgeons, one male one female. as the male doctor began his narration he used the word, “mastectomy”. the female doctor leaned over and whispered to me, “you do know don’t you, this is really an amputation of this woman’s breast.” i was too stunned to respond. that was in 1980. in retrospect i’ve wondered – did the woman doctor ever have the privilege of providing the surgical narration? and if so, did she use the word, “amputation”?

at first, i opted not to view the video. tomorrow is my first scanxiety since being deemed NED. all evening i have been having painful twinges in the breast that was treated – WTF??? then i went back and re-read all the comments left on this post. and then i thought a different sort of WTF??? then i watched the video. and you know what? even though i cannot speak in a voice of having had a breast amputation, i can still speak in one of being a fearless friend, and i can join you scorchy, and all of the other people who wonder both silently and aloud about how language informs behavior and attitudes, how it just may be possible that the sheer numbers of people, perceived as picking themselves up and dusting themselves off and “dealing” with their mastectomies has created a lack of urgency to find causes and cures. perhaps the answer lies in all of the above – paying witness to the raw truth of not just the surgery, but even more important, to the stories of real women voicing their real thoughts, their real emotions, the pain that is not only physical but that can engulf and pierce one to one’s core, the anger at such a seemingly status quo “solution” that leaves so many so devastated.

i am glad that i had the chance to re-visit this post, and all the awesome comments and your responses to them, scorchy. and i am grateful that all i read lead me to REFUSE to let fucking stupid cancer rob me of that chance to pay witness to what i was fearful of. but i am still going to take some ativan.

Your replies are always so thoughtful and heartfelt. Interesting that the female physician felt compelled to point that out. I have not had my breasts amputated and even though I’m stage iv, I don’t feel that I’ve gone through the hell that so many women have. I mean, I haven’t. I don’t know what the future holds for me, but to be faced with a decision like that? I dunno. Before I was diagnosed stage iv I was asked about genetic testing, although it wasn’t really necessary in my case I said I wouldn’t do it because even if I knew that I had some chance of developing cancer in the other breast, I wouldn’t remove it as a prophylactic measure. It takes a lot of guts to decide to undergo this surgery, but I really really wonder if it isn’t done to excess.

Part of it is that these surgeries are, for the most part, successful. Women survive, move on–just like we do for knee replacements, heart surgeries, etc. In one sense we ask “So why should this be any different”? I think back to the time my sister was getting info on her pending hysterectomy. The doc’s rationale for removing the ovaries was that removing a man’s testicles wouldn’t make him any less of a man. Yeah, dude, and how often is THAT done?

Good luck on your scan! Be sure to check in and let us all know the results. I’m in your pocket!

I found the film very difficult to watch. I also wondered about the woman in the film- I wondered what her life was like after the surgery. And I admit, I hadn’t really thought about a mastectomy being called an amputation – but of course that’s what it is.
I couldn’t agree more…”There is a constant struggle with language, who gets to use it and who gets to shape it.” I constantly use the phrase- “breast cancer is not pretty and it’s not pink.” and then I wait for the comments or the interpretation of what the other person understands this to mean. Often, the result is a troubled look on the face of the the person I am speaking with, not sure what to say or waiting for me to explain.
Thank you for the Incredibly powerful post. Donna

I have always felt no matter how much you try and “pretty it up with pink” It is still an amputation. You are losing a body part not clipping a hang nail. We are deluded in believing we take all these steps shave our heads wear a pink ribbon joining a Breast Cancer Race or movement there is a cure somewhere in the not to distant future. Only that’s not quite the truth is it.. The physical and mental pain we endure is obvious, However if we react in being told how we should be dealing with our cancer we are ostracized as whinny vapid females with far too much time on our hands.Yet we are still dying, there is no magic pink button.What else can it be called except an amputation ? Not only the breast but many things in between.is cut away from us as well…
Love Alli…..

I love your blog and your insight. I’ve not been able to stop thinking of this post since I read it. I agree with you about the power of language. A mastectomy is an amputation, no doubt about it. One quibble: I don’t think having a breast amputated is analogous to the amputation of an arm or a leg. Beyond breast feeding, we don’t need our breasts in quite the same way as arms and legs and I’m pretty sure those who have lost limbs (to cancer or otherwise) would agree with me.

I don’t say this lightly. I had my right breast amputated in 2006 and the discomfort has never gone away. I cannot have reconstructive surgery (and don’t know that I would if I could) and wearing a prosthesis hurts if worn for more than very short periods (because of scarring and truncal lymphedema). I know that my asymmetry and my increasingly concave right side draw attention when I would like to pass un-noticed. I miss my pre-amputation body.

However, I cringe at all the “save the boobies” campaigns. To me, the implication is that if we lose the “boobies” we have lost the battle (and never mind the idea that some of us live when the boobies are gone and some breast cancer goes well beyond the breasts into other parts of our bodies). I know that’s not what your intention is here (and it’s not what you’re saying) but I wonder if placing too much importance on breasts doesn’t play a little bit into the “save the boobies” mentality.

There is a fine line to walked between acknowledging the trauma of breast amputation and placing too much emphasis on the importance of breasts. I’m still trying to figure out where that line lies, for me.

I completely agree with you. The core of this whole discourse is defining that line. I also agree about the arms vs breasts as well. It was an extreme comparison meant to make us think. I am a professional gadfly, after all. 🙂

I, like many here, have had multiple go-rounds with breast cancer (thanks to good old Brca1). I felt mutilated every single time but never felt able to articulate it because the expectation seemed to be that it was a small price to pay for survival.
And, of course, apart from the knowledge that I had cancer a while back, there is no longer any external evidence that I endured that bilateral mastectomy and reconstruction.
Even now, as my right arm continues to lose function (RIBP, 1985 therapy), I sort of feel a twinge of guilt at my lack of total gratitude for still being here.
Then there’s the public persona – wouldn’t want to make people feel awkward around me so I’ve perfected the perception of Zen for their benefit.
Sometimes I get so pi%%ed offf I am not fit company for a while.
Thanks for the opportunity to rant a little.

“I felt mutilated every single time but never felt able to articulate it because the expectation seemed to be that it was a small price to pay for survival.” A powerful statement, Janet. That is rolling around and around and around in my head. Dammit. I absolutely abhor this reality that we live with. ((((hugs))))

Amputation. I’ve not thought about mastectomies in this way. My bi lateral mastectomy was over a year ago and yet I’m still having complications; Radiation effects and a staph infection, to name a few.

I think it’s an appropriate description and yet I must be on guard so I don’t allow myself to sink even further into the darkness of “What if?,” and “What’s next?” I’ve already spent a good portion of time and energy in that dark place, as I’m certain I will revisit these depths again from time to time.

Scorchy,
I think the whole experience of breast cancer is too often down-played and presented as being not all that bad.There’s probably lots of blame to go around, but there’s no doubt “pink ribbon culture” has played a large part in this skewed portrayal of a deadly disease. And I’ve often thought amputation is a more accurate word to describe what a mastectomy is really like. The video is very hard to watch, it’s beyond brutal. I couldn’t make it through. Thanks for this thought-provoking essay.

So many things to think about in this post. I didn’t consider my bilateral mastectomy as an amputation at the time — I was focused on getting rid of the cancer so I could live — but after the fact, I did think about it, and it hit me hard. Yes, mastectomies have become so commonplace; perhaps it is the tonsillectomy of my youth: any little trouble in the back of the throat and the ENT yanked those babies. Nowadays a kid has to get strep once a month before surgery is even considered. Are mastectomies this generation’s tonsillectomy? Perhaps. I guess the fact that they have become so commonplace and accepted is a good thing if it allows for the process to no longer be considered shameful and secretive, as it was in Betty Ford’s day, but I’m with ya on the lack of a cure. Would there be more effort made toward that cure if our cancer weren’t so “pretty” and “the good kind” and so culturally acceptable? As usual, you make us think!

This is one excellent essay/post/conversation – makes me think and think and think. You raise such a fascinating question about the removal of body parts to prevent cancer, and the feminization/’right of passage’ around mastectomies and breast cancer. I’ve never before thought of my mastectomy as an amputation – can you believe that? ~Catherine

After a bilateral mastectomy (radical on the left side because of how extensive the cancer was), I got the feeling that I was supposed to just pick up and carry on — like it was no big deal.

So I did.

But when I let my mind face the reality of what I’ve been through, of what so many of us with breast cancer have been through, I feel a deep sense of loss because of this amputation.

It is a shame that it is not acceptable for us to call it what it really is. And that we have to pretend it isn’t a big deal. Maybe there would be a vaccine or a cure by now if mutilation weren’t so accepted as a form of treatment or prevention.

I don’t like to use the word ‘survivor’. For me it’s like an anchor to a place I wouldn’t want to be for very long. But when I steeled myself to watch that footage I pay homage to my body and the miracle of healing that lies within that helped me survive the horrors of that trauma. It’s truly sobering to watch and to realise just how incredibly strong we must be. Dressing it up in pink ribbons? The sugar coating really presses my buttons. The irony they finished the op by dressing her with silk thread…

We are resilient creatures, there is no doubt about it. You cannot help but look at that film and wonder about that woman. If she survived the cancer (if it hadn’t already spread), how she coped, what her life was like after. It’s gut wrenching on so many levels. As you say: the sugar coating presses my buttons as well. xoxo

Scorchy, you convey a powerful perspective, as always. Not to be nitpicky, but I think the lifetime incidence of breast cancer in U.S. women is 1 out of 8, not 8 out of 10. My experience has been somewhat different but I understand that you are making arguments about culture at large. I hate having cancer. I hate the fact that I’ve had seven surgeries. I hate that I lost a breast and frankly, reconstruction is no walk in the park. I hate the sexism in our culture but I love being a woman.

I am a researcher and used those skills to understand my choices from a medical perspective. I am a psychologist so I also used my knowledge of women, loss, stress, and grief, to inform my choices. I do know, based on current research that there’s a chance that the cancer that was removed from my body, may not have spread, if left untreated.

All I can do is make the best decisions I could with the information I have at a given time. And I have been satisfied with my choices thus far.

Finally, surgery in the 50’s was a lot different than it is now. Although there’s no denial that sexism plays a role in breast cancer treatment, medical advances also play a role. The function of a body part also informs medical recommendations regarding amputation. Your point about men not getting both testes removed is apt. However, I don’t think the leg comparison is fair.

I love your blog, Scorchy and your voice is much needed and very powerful. Xoxoxo.

“Any woman who has had a mastectomy can speak to the physical and emotional pain and the fear; the impact it has on her family, her friends, and her work; and not to mention a fear of the future” Too true Scorchy. I remind people inside and outside the medical arena that what’s happened to me is an amputation – a major amputation – because the whole mastectomy thing seems to underplay what is a life changing and serious surgical procedure. Sadly I’ve found the people who are least aware/interested in the physical, psychological and emotional impact are my employers.

That is a a really significant point, Tracy. *Mastectomy* is so routine, so ordinary, its physical and emotional impact is lost on almost everyone save the woman (or man) who must undergo the procedure.

When I was going through chemo the neighborhood nurse came to my home every so often to check on me and give me my injections. One day we were discussing reconstruction (I had a double masectomy) and she offered to put me in touch with some good local surgeons. Because, she said, “c’est une mutilation” and something can be done about it once I get the go from my oncologist. I liked her choice of words very much (and trust a Frenchwoman to be very direct and compassionate all at the same time) because it was exactly how I perceived it. Masectomy is too poor a word, I think, for what I see when I look down at my chest..

Scorchy, I started watching the video, but had to turn it off because I’ve endured that surgery a few times now. In fact, I just wrote about the 3 surgeries I had last year to reconstruct my breasts. I’ve endured so many reconstructions etc that it just tore at my core.
I love your blog because you open the scabs of our wounds, help us to clean them out and heal again. I applaud you over and over. It’s because we all connect and are in this together that we can heal ~ taking a little bit of hope and love and reality from eachother in order to go on.
Thanks for being you. You are a blessing. xo

But what comes to mind is that not many of us have seen what they do to us when we make that fateful decision. Thanks for being courageous, truth-telling and especially for just being you! I’m with you! xo

You know, there are plenty of videos on YouTube of mastectomies. This video is all the more stark because of its absence of modern surgical techniques and the fast movement of the film, so I am aware I chose this to make a point. But until my friend brought that to light, I hadn’t thought of it as *amputation.*